Days long gone by.

A little update. It turns out that Jake’s Thyroid meds are out again, which will explain why he has been feeling so lacklustre of late. Hopefully an increase in meds will result in more time out of the bed than in It. He has also been suffering from migraines and as a precaution has requested a brain scan, just to be sure that cancer is not the cause. The consultant has agreed to this request, but we have to wait till February when his next scans are already scheduled.

We have had a nice time lately with my mum staying, then Jake’s mum and dad staying, intertwined with a few much appreciated social invitations. So it’s definitely not all bad. On the whole we are happy.

Having a bit of a sentimental day today – not, surprisingly, about Jake and I, but instead about days long gone by.

I haven’t been sleeping at all well lately and last night was no exception. I decided to listen to my body for a change and rest, so I put my feet up and turned on Sky. Somehow I ended up engrossed in replays of various ‘New Kids on the Block’ videos.

As a kid I was a huge fan, and the songs evoke memories, mostly of being incredibly young and naive; in some ways it doesn’t seem that long ago. I had a huge crush on Joey and looking at him now, how he looked then, he is a child! How quickly I have gotten old. How quickly life has gotten serious. Back then everything seemed so intense, but really, what on earth did I have to worry about? I had braces, I had spots, I felt ugly, and I longed for everyone to like me; I wish that was all I had to worry about now.

I wouldn’t swap my family life for anything, but sometimes I think it would be nice to spend just a day back as a kid, to have NKOTB as my world rather than this constant worry.

 

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Lochgoilhead

Last week was half term and we decided to treat ourselves to a last minute, mid week caravan break at Drimsynie, Lochgoilhead, a favourite old haunt of ours. Jake was just finishing his Sunitinib cycle, a particularly bad one this time round, and we felt a treat was much needed. After a year of frenzy, I am now well versed in getting both car packed and house tidied pre-trip, so we set off as planned, with fairly low stress levels. I am pleased to report that said levels remained low throughout the duration of the trip.

Drimsynie has the most amazing leisure centre, a hot tub that beats all hot tubs and a really warm pool; we were both looking forward to luxuriating in the heat. The kids were happy to spend hours in the pool and we managed to have a share in watching them; I would have been so gutted to miss out on that hot tub! Jake finds swimming and sauna really beneficial to his fitness and pain, it’s a shame there’s not somewhere similar near to home.

We were married close to Lochgoilhead and our wedding photographer, the very talented Derek Prescott, lives there. Historically Jake has hated posing for family pics (the last session we booked a few years back caused so many grumbles) and I had impressed on him the need for us to take a few more given our situation. Feeling suitably guilty, he suggested contacting Derek to see if he would be willing to tackle an informal shoot around and about the countryside we love the most.

Rain aside, everything went to plan and we are now the grateful owners of some very precious family pics. Neither of us look anywhere near as dashing as we did on our wedding day, but we think that Derek did a very good job given his subjects! Jake hates the fact that his hair has a tendency to look very white, his eyes to look puffy, his face to look bloated and yellow, but I think the pictures have come out well. Personally, I think that if you didn’t know, you wouldn’t tell he was so poorly.

The holiday went with an absolute bang and the kids lived every minute. We hosted a surprise caravan party with presents, games, balloons and cake. The club disco proved a hit and the leisure centre, which boasted soft play, mini golf and much more, meant that there was plenty to do. It rained a lot but we managed to fit in scootering, bike riding and fishing; the only thing I missed out on was a decent walk, that is, a walk that doesn’t involve running after boys on scooters! Lochgoilhead is a stunning place, and aside from a nagging toothache I found it fairly easy to ignore daily worries and concentrate instead on the giggles and the love. Now back to normality and back on the pills.

A darkened room.

As days go, on the face of it, today has been a good one. A bit of exercise this morning, then a bath, a bit of craft this afternoon, tea out with the kids, then an early bed for Tommy and a chance to watch an episode of ‘Victoria’ this evening.

If it wasn’t for the fact that Jake has been absent all day, upstairs in a darkened room, wretching time after time, head banging so much that he’s reluctant even to speak, I’d say it was most positively a good day. My poor love, I hate to see him so unwell, especially in contrast to how good he can be.

A year has passed now and I wonder if we’ll have another together. On good days I see the years stretching ahead of us. On bad, not so much. It’s a rollercoaster of torment in varying degrees.

Any amount of ‘shrunk slightly’ sounds good to me.

Almost a year since Jake heard the dreaded words “It is bad”, we have finally had some positive news. The latest CT scan has shown that the tumor has shrunk slightly! By how much we don’t know, but any amount of ‘shrunk slightly’ sounds good to me. In addition to this, his Denusomab injection has helped some of the pelvis bone grow back. There’s still a substantial hole, but again, any amount of grow back is positive. There was only one finding which lingers in my oversensitive worrying head – ‘two small indeterminate lung nodules’. These are too small to be of issue just now, but we will be on alert for any lingering coughs, just in case.

The scan results are a really pleasant surprise as Jake has been plagued recently by increased kidney pain and vomiting; he felt sure that his tumor had grown. I guess human nature is to worry and we certainly feel like it’s wise to prepare for the worst, so it really is a relief to receive better news; I expected to be crying in bed tonight! Jake is underwhelmed, but i guess it must be hard to feel relief when feeling so fed up with sickness, and suffering from constant pain in the kidney, slow throbs, even when seated.

Beautiful Ireland.

Today is our last day in beautiful Ireland. Unfortunately, Jake has been in bed all day so his last day has been a bit of a let down. The boys have been sand-dune-sledging and sand-castle-building but they do miss their Dad when he’s flat out.

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The beaches here are stunning, but for some reason, this visit, they have made me feel melancholy. The beach offers a peace that totally contradicts the chaos that is generally in my head and I have found the longing for peace overwhelming, especially at moments when responsibilities have prevented me from taking a wee walk. I wonder when I will ever feel such peace in my head again; I know it will come, but how much chaos will come to pass before it does?

This holiday has seen Jake and I often on different schedules; he has spent time fishing and boating and sleeping, while I have looked after the kids. It has meant that much of the time I have been both a) without Jake and b) out of routine, and I have found myself stressed; I haven’t coped well at times. It worries me how I’ll cope on holiday completely without Jake. Of course just now I appreciate any help I get, but no one is quite the same as Daddy.

Our hosts have been amazing,  they really have gone the extra mile to make us feel accommodated, entertained and comfortable. The house is just perfect and i have been totally spoiled. A big thank you to everyone for putting up with our chaos for a week, truly appreciated.

Jake has just dragged himself our of bed for his final ‘treat’ of the week – a spot of evening lobster hauling. He says he feels sick and has a splitting head, but is determined not to miss his last chance of the holiday. I suppose there are worse places to be sick! I’m pleased that today won’t be a total wash out for him.

Crazy fool!

Jake was really upset, one day last week,  to realise that a colleague had died. The lady in question had been diagnosed with brain cancer, but her body wasn’t managing chemotherapy well and she lasted only three months.

They had a good working relationship, she and Jake, and she had been gutted to hear about Jake’s cancer. She had no idea of her own cancer back then.

On hearing the news Jake immediately felt guilty. How is it fair that he could enjoy a boat trip while someone else had suffered and died?

Of course it makes you wonder who else has their own cancer hidden away, silently destroying all they hold dear. Do I?

One thing’s for sure, it’s worth making your days count. Here in Ireland, Carrickfinn is breathtakingly beautiful; a place to easily make great memories. Here you can see Jake making it count – crazy fool!

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An idyllic sea and a satisfying holiday

On Thursday we woke to an urgent phone call from the marina, informing us that our boat had filled up with water overnight and was in danger of being submerged! Thankfully however, we had completed our last sail and all that remained for us was to pop the boat back on it’s trailer. I am pleased to report that this was the only worrying experience of our boating.

For the most part we had an idyllic sea, the surface ranging from oily calm to gentle wavelets; it meant perfect sailing conditions for a man with a dodgy leg. Jake was able to manage the bumps ok and we went out every day bar two. Jake had a bit of nausea and they certainly weren’t ‘full days’ out on the sea, but it was a satisfying holiday nonetheless.

The kids loved every minute and we spent most of our time on the Isle of Cumbrae  playing on the beach and eating chips at Millport. Unfortunately Jake wasn’t able to join us on land (technicalities with ladders) but he had a lovely time relaxing, reading books and fishing. He admits that the sea is where he belongs so I doubt he was too bothered!

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It was great to finally have the boys share our sea-borne passion and if we never manage to get it there again, at least we have these precious memories. A big thank you to all who helped it happen.

On arriving home, Jake is absolutely shattered. As tends to happen when he’s feeling energised, he gives his absolute all and completely wipes himself out; yesterday saw a fair few tears.

We saw his surgeon at 3pm. It has been agreed that an operation will only take place if Jake gets to the point where the surgeon feels it would be a benefit to pain relief or mobility rather than the medication he is currently taking. As things stand, no operation would improve either of those things. We are still waiting for an appointment for the new CT scan to see how the tumors are doing.

On leaving the hospital Jake commented how so many people looked really ill,  but many of them will get better, whereas he looks really well, but he’s not going to get better. It worries him, looking well. He worries that people will think he is exaggerating his illness. It concerns him too, having sat on a boat for a wee holiday, that people will see him as a fraud. ‘See that man, he can sit on a boat all week but he can’t go to work…..’ and that makes him feel like he should go back to work.

Personally I don’t think Jake could do his work reliably and effectively. His brain is shot most of the time, mixing up even simple things like colours. ‘Where’s my green jacket?’ Um, you don’t have a green jacket! Blue? He struggles to get out of bed consistently and we can never tell how he’s going to be from one day to the next. We had a three day convention recently which involved being out of the house for 9am every day. He ended up falling asleep there each day!

We are soon off to stay with Jake’s Uncle Joseph in Ireland.  Uncle Joseph is Jake’s childhood hero and our Joseph’s namesake. He lives in a beautiful spot in Carrickfinn, in a house he built himself, right next to the beach. Joseph is a proper seaman himself and we are hoping that the boys will be tired out by day, enjoying the outdoors, and that they won’t see their summer holidays as having been spoiled by cancer. Jake is also looking forward to ticking something off his ‘to do list’ – eating lobster fresh from the sea.